Introducing Max – Special Needs meets Special Bear

A special Item

Many of us know the power we place in objects that are special to us. from special toys as children, to a favourite pillow as an adult. At some point in our lives we all have a special connection to something inanimate, something which can make us feel safe. This is especially true for children who from a very early age can become dependant on those favourite teddy, dolls, toys.

Our children have all at some stage had a favourite teddy from Bessie who has done a few hospital stay in’s to a heatable polar bear who has travelled the length of England and I am pleased to say even my eldest two who are now high school age still need the love and security they get from that special teddy although hidden out of site.

Special Needs, Special Items

Having a child with special needs can make the task of having a favourite specific teddy more difficult. The need to ensure he never goes missing is always paramount and so the best advice if you are able too is to buy more than one of the same ted!! But this blog isn’t all about those first teddies who we keep and love forever. This is a blog about something new. This is about two of our daughters, one who struggle’s with anxiety daily, has hearing loss and ADD (Attention deficit disorder), has struggles and fears about high school and another one of our daughter’s who struggles daily with hearing loss, possible neurodevelopment issues, anxieties about being away from mum, adapting to her surroundings and their new friend Max MindPower from www.max-mindpower.com

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Who is Max?

While waking up one morning a few months ago something caught my attention on the news. The BBC were filming a segment at a toy fair and there was a lady talking about Max Mindpower. It was a very brief report but something struck a cord with me. After quickly jumping on the internet what finally captured my full attention was not only the appeal of a cute bear but more than that was the story of how this bear came into being.

You see Max is a Mindfulness bear invented by Nikki with the help of others. The back story of how he came into being is amazing. The story that Nikki briefly touches on, on her website is one of determination, hope and amazing resilience, All things that I hope my children will have as they walk through life. So Nikki having gone through such an ordeal personally still had the care, compassion and fire to put her own experiences into a beautiful product designed to give back to those who use him using a simple meditation technique and stories. Whats more Max can be used by adults and children alike, with or without disabilities.

Max comes in two sizes

Max mindpower junior

Max mind power senior (who we have)

Both Bears have three guided meditations which are Body scan, Mindfulness of Breathing and Kindly Awareness plus a Neuro-linguistics exercise which is designed to help capture good feelings. Max works through these meditations with you and even breathes with you. His amazing tummy goes up and down which is amazing for those that need a more interactive, visual element to keep them focussed and engaged.

Each bear also come with their cute little jumpers and a backpack in which to keep the accompanying books. For the cost of these bears £29.99 and £39.99 respectively they really are great value for what you get and the after care is brilliant.

Max at Home

We have had Max Brown as we call him for a few months now and he is a wonderful addition to our family. Initially he was used a comfort aide, taken to high school, and brought out when my daughters anxiety felt a little overwhelming. Then we started to work through the story which comes with max, “The story of Max MindPower” which is about how he came to be. This is a special part of who he is and the books are written so that children are fully able to engage with Max and for my own daughters they feel a connection with him.

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Next came actually using Max to stop, sit down, think about and release those bad feelings that my Daughter was having connected with her anxiety. We use Story Massage  www.storymassage.co.uk as a family to write about our feelings and use massage as part of our routine as a relaxation method but by combining this with Max who talks you through a short meditation routine, we have been amazed by how much he has helped L with her feelings of worry and how when she needs 5 minutes of calm and that extra incentive to relax max is there ready and waiting to do what he was born to do.

He really works, so much so that as a mum I have used him as well. You may think I am crazy, a 34 year old women using a talking teddy bear to help me refocus and relax, but when the kids have gone to school and I am feeling stressed from the school routine and I need to relax before I start work as a Massage Therapist, just 5 minutes with Max and I really feel like I am ready to face the day.

He really is a part of the family and Nikki his inventor is such an wonderful role model for anyone who needs that little bit of help and support and to know that even when bad things happen, with love support and the right tools our children and ourselves can be really amazing.

Check out Nikki’s website www.max-mindpower.com for more information and to start your own magical journey.

XX Leanne XX

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Time to Be kind to Yourself?…..It Is for Me

As a Mum of any child it’s important to have time to recharge your batteries, time to breathe, to think, to relax and to be something other than a Mum. For those of us who are carers as well as mums this is even more important for both our physical and mental health.

Well pants I have not taken a leaf out of my own book and now I am at the point where I am exhausted and unwell. I typically try to relax and recharge once a month but with Christmas and work and appointments I just haven’t had time to think about me when the needs of the girls are fore front in my mind. It wasn’t until someone else noticed that I was having absences that I had to ‘get real’ and get myself to the doctors. Stress can do wonderful things to your mental and physical health and it can affect people in different ways. Hopefully and I sound daft I know but I am hoping that that will be the diagnosis as stress I can deal with, I can tackle it and get better. If it’s anything else then no idea, I can’t think that far ahead.

So here is the bump in my road, I now can’t drive pending tests for what I think is stress but not being a specialist, and having disabled children to look after I can not take the risk it may be something else. Now I can’t drive, I’ve surrendered my license and I feel like a failure. I can not get my daughters to school, to appointments, I can’t even nip out and get a load of bread. I’m stuck and for the first time in 12 years I am having to rely on the help and support of family and friends to help me. I feel like I have been firmly put on my arse and that the universe is staring down at me with a critical eye waiting for me to break down.

I have spent so long priding myself on doing the best that I can as a Mum and as a carer that I failed to see the warning signs. Being able to take time out has always been the way I have coped be it nights out, massages or even just a cuppa with a friend or sister. The last few months have been a little more stressful than normal with L starting high school in September, the interruption to routines caused by snow days and having another daughter having tests resulting in more appointments has meant that I like every other parent has had to prioritise time for myself against the needs of my children. Who wouldn’t do the same? I am only 1 person and even with a great support network and an amazing husband who does as much as he can we are still only 2 people at the end of the day. These are my girls, I am their Mum it’s my job to look after them and I feel guilty if I can’t so I give up my time for them.

So universe I am going to get back up and get better. I don’t know how but I know with the love and support of the people around me I’ll get there. I’ll get better and then I’ll make sure I have time for myself in order to look after my own health and well-being.

Take care of yourselves, be kind to yourselves

Xx Leanne xx

It’s a Snow Day for Anxiety…..Yippee

How wonderful…… its an unplanned day off school yippee

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Or not as the case may be for parents who like me are not only struggling with outburst’s, bad moods and just the usual stress of having having children at home with a disruption to their routine but also a child who has Anxiety.  My daughter can have feeling’s of:

  • restless
  • on edge,
  • irritable,
  • feeling sick,
  • mood swings,
  • tummy ache
  • headaches

These symptoms can affect my daughter in addition to her ADHD.  L get’s worried about going to school or in the case of a snow day not going to school. Anxiety can affect a persons relationships with those around them and this affects our family quite badly as L’s anxiety then rubs of on her sister’s and causes tension and strife.

Having children who do not do well to a change in routine can be so bloody stressful, everything has to be planned and written down and two of my girls just can not cope if something changes. Its not like I can even fully prepare them for a snow day, the weather forecast is never foolproof and more often than not forecasted snow misses us, But not today…..

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So yes the news has been forecasting the weather, talking about the “The Beast from the East” for the past few days at least, the kids have been asking Alexa when the snow will arrive and while there is definitely an element of excitement at having proper snow there is also the constant questions ‘what if we can’t get out mum?’ ‘when will we go back to school?’ ‘how long will the snow be here?’  For most this wouldn’t cause upset but having a child that feels anxiety no matter how much I try to prepare them just makes a snow day a headache day for me. So much so I just want to go and hide under the cover’s and shut the curtains and pretend there is nothing going on.

You may judge me for it, call me a Scrooge, a misery but yes when its a school week I would much rather that my children were in school and not just because it’s easier, less stressful but because its routine. They know what they are doing, when they are doing it and how their day will pan out. Having unplanned days off especially in the middle of the week can be upsetting and confusing for them. They want to be in school with friends but they also want to be at home playing in the snow. They can become worried about family and friends who are out driving in the snow, They become over worried about pet’s. Eventually as the day draws on they become irritable and angry with themselves and others in the house. Having 4 children with different needs is interesting to say the least when confined to the house (which is a little on the small side).

So there was me this morning becoming emotional at my husband as he was getting ready to attempt the drive into work while I was on the bloody website this morning from 6am constantly checking the school closures hitting the refresh button while constantly being asked “am I gong to school?”. I can honestly say I was hoping that our’s  would open, alas it wasn’t to be and at 7 am this morning the girls were hooting and hollering because they were having a day off while I pulled the duvet up and cried.

The funny thing is that we soon slip into a sort of weekend routine where by the kids have breakfast, get dressed, scream at each other, then make up before getting ready to be out of the house at 8.30am in the snow. For me on a snow day I get 30 minutes of fun running around in the snow before I am left with the bedlam of great drafts of wind whistling through the house due to open door’s, wet clothing and puddles in the house, clothing changes every 20 minutes due to be wet and cold and thats before they then come back in again and are bored, yelling at each other and me.

I love the snow, I love as a grown up being able to watch the snowflakes and as a mum listening to the shrieks of laughter from my girls. What I hate is the extra challenges that our family faces even in the face of just having fun.

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Fun before the Bedlam (LeanneBrown)

 

Have fun in the snow, stay safe, stay sane

xx Leanne xx

Sometimes I cry…Raising Disabled Children

I haven’t written in a while, life has just seemed to overtake me one week blending into the next. I keep going from one day to the next in the same routine as though I was stuck in a ground hog day. Do you ever get fed up of doing the same thing day in day out? Be Honest…..I do it drives me wild to know that when I open my eyes the day will start the same as every other and that by trying to change anything I just make life more stressful for myself. It can at times seem like we are living with a Dictator. Having 4 girls anyway the hormone levels in this house can be through the roof, factor in one who has ADHD, memory problems and other issues and I am surprised the husband hasn’t moved into the shed.

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Now I know what some of you may be thinking, Am I just whinging? Am I being silly? Am I weak? A bad mother? The answer is no…..Anyone raising a child with any form of disability knows that you have to adapt, you have to work around their quirk’s, their behaviour and in most cases you really do have to just make the best of any situation you can. Its really hard to do this and still feel that you are being a good parent. I worry every day the effect that one Childs disabilities is having on her siblings. I also worry that my other daughters perceive their sister as the favourite, the one who gets all the attention wether its good or bad. I worry about the relationship’s my children forge, the way they are at school, I get angry at the stupid things they argue about and at the end of the day I cry. I cry for the things one daughter has lost, I cry about the disabilities, I cry from the stress, I cry and there is no shame in that at all.

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Having 4 children is hard, I am judged for having four children and at times I feel its my fault they are who they are, but is it?  I also feel really anxious when my youngest acts out. I feel certain that its learnt behaviour being 4 years younger than her sister she has grown up watching that one can be naughty and still get attention, but it scares me what if she also has ADHD?

So how do you split yourself and be in effect two different parents at the same time?

Truth is 14 years later I still have not found the answer. I struggle day in and day out with how to best be a parent. The way I parent is constantly evolving and changing to adapt with the needs of my children but it is also constantly being observed by those on the outside. Not all disabilities can be seen as is the case with my daughter’s. They do not sound any different, look any different and at times do not act any differently to other children. It isn’t until you look closer that you start to notice the subtle differences, the hearing aids, the slight lisp to words, the forgetfulness of one, the behaviour at certain times of day when medication has worn of, the Anxiety living life. If you passed my children in the street you wouldn’t notice anything other than 4 sister’s.

This is perhaps the hardest part of being their mum, unless you are living the life that I am you can not fully understand how exhausting it is trying to keep everything together. That smile on my face at 9am is one of relief not happiness. The frown at the end of the day is born of tiredness and also stress. That sigh is after another round of upset screaming, or a round of abused hurled my way that makes me feel like walking out. In fact I have come to realise that in trying to raise them, teach them and make sure they get every opportunity to be independent I sometimes need to take a step back, read some of my blogs and realise once again I am not wonder women, I am not a magician I am a mum and one that will adapt, fight and evolve even while feeling like I can’t do it anymore. Its not what I signed up for but do you know what, these children amaze me everyday, there tears but also laughter, theres anger but also love and even on a bad day I will always love and be in awe of my children.

xx Leanne XX

You, Me and ADHD

 

Putting my hand up in class….no way
Going up on a stage to preform….not me
Talking to people I don’t know…is there anything worse
Feeling out of depth in new situations…yep me

 

This use to be me and I bet its a lot of other people out there too. I had the confidence of a gnat growing up and into my early adulthood, and even then I think a gnat would have slightly more. I use to be shy, hated talking to people I didn’t know, would always be the one on the edge of the group, nodding and smiling wishing I was anywhere but. Having children at first didn’t change this. Yes I went to toddler group’s but made sure I went with someone I knew. I hated going to the weigh in clinic and I never asked question’s and I just did what I was told.


To be told that your child has a disability, special need’s and needs regular check up’s, investigations and so forth didn’t really change how meeting new people made me feel. I hated every appointment in the beginning, would nod my head and give permission but it was like there was someone else inside me answering. I would get butterflies on the way to the hospital for hearing check up’s and get myself all worked up, I would sweat, feel sick and then I would break down on the way home, disappointed in myself as there were questions I wanted to ask and I was too afraid to ask them.

For me I realised that this had to change, that I had to become the carer and voice that my children needed me to be. My daughter was 2 when she was formally diagnosed with a hearing loss and 7 when she was diagnosed ADHD. A big change in my confidence, and strength levels was needed.


I started by accessing online forum’s, talking to people online started to give me the confidence to get the answer’s I needed from the people we were dealing with in our daughter’s care. Being on a forum also gave me confidence to talk to people about my experiences and also to offer advice to those just starting out on their journey with parenting a child with disabilities.

One big recommendation would be to have a note pad and pen and jot things down that the doctors and specialist’s say in case you want to research them and keep that notepad in your handbag, coat pocket so that if you think of anything you can then remember to ask at the next appointment. Its easy to forget long words and to in some cases zone out when you are given news to process, and having to wait weeks for the write up letter to come through so you can remember can sometimes put you on edge.

I had to dig down deep but I decided that I needed to put my children first instead of my own discomfort at talking to people. I became my daughter’s advocate, her voice in a world where adult’s make nearly every decision for her. My confidence does still waver from time to time but I remember that I am doing it for these four amazing girls who are all looking to me to be their role model and for the families who are diagnosed daily and are placed in the same position I was …no way am I letting them down.


If you want to know more, please do follow our blog at http://www.leannesihm.wordpress.com

 

Massage and sleep

Does massage encourage sleep?

We were those parents who struggled nightly with trying to get our daughter to sleep. Facing the tantrums, the tears, the heart wrenching sobbing and the ear splitting screams. We faced the ever depresssing ebb and flow of emotions from anger to frustration to just total exhaustion. 

Bedtime hygiene……

As a parent I submitted to the specialists and did everything that they told me to do….religiously 

  • No computers, TV, games console, phone, or any other electronic device
  • Black out blinds
  • No night lights 
  • Same bedtime hour
  • Soothing baths, bedtime strories, classical music, snacks, drinks 
  • Medication


I went on sleep courses where I felt like a failure as the rules never seemed to apply to my daughter. It became frustrating and to be honest I stopped going as nothing was making any difference. Our daughter was stressed out and so was I. 

Next step…

Late one night while my daughter was still trying to go to sleep I was googling for help and advice. Firstly what strikes me is that a lot of the research and information available is based on studies in America. While speaking to parents over the years sleep problems are a significant issue here in Britain so why are the specialists here not better able to help us. Why are we given medication and told to get on with it? Why are we told to attend courses to teach us what we are already doing? When will doctors accept that for some children sleep is a real medical issue and not parents making up symptoms in the hopes of a quick cure to make our lives better??

While researching one sleep deprived, weary night I came across mentions of massage. This is something that I had never considered before but having come out the other side of relationship problems, feeling insecure but determined with the thought of doing something for myself appealing I booked onto an Indian Head massage course. 

My Nephew enjoying 5 minutes of massage

The course took 3 months to complete and with my daughters permission I used her as a case study. Well wow from the very first massage move my daughter was a little less tense, a little less stressed and that night along with her medication she went to bed and actually slept. Well like you I thought it was a fluke but as the course progressed and my skills became more fluent and skilled we noticed a big diffrence in bedtimes. 

Don’t get me wrong massage is not a cure, sometimes it will work but others it won’t. The biggest thing for me is that it encourages the bond between me and my daughter. It’s time that we can spend together, relaxing. Massage also helps to relax me which in turn has a positive effect on my daughter. You see if I am angry and stressed she bounces off that, once I calm down I have noticed she does too. 

How can I use massage at home….


Massage does not mean that you have to go and train. A massage could be a back rub, twirling hair at bedtime, it’s about positive touch. For those who would like a bit more structure then I recommend story massage. You can learn 10 simple massage moves that you can use with any song, story, rhyme and can be used anytime anywhere not just at bedtime. We use storey massage all the time from camping to the doctors. Massage can help reduce tension and stress, can help to calm and refocus and with the story massage you can have fun with your children creating massage stories and….

Best of all mums and dads your children can share a massage with you!!!

If you would like to find out more or just wants chat please do contact me

Xx Leanne xx

Highschool – ADHD milestone

The last couple of months have been hard work. Having a child transition to high school is daunting enough when they don’t have special needs. Having a child that does have additional needs puts a whole new perspective on the transition for me. Having been in this situation twice before I thought I was prepared for my third daughter to start high school. How wrong I was….

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My daughter 11 years ago 

With so many meetings, notes, letters, forms, questions it has taken me this long to just sit and appreciate that this is a huge milestone in my daughters life.  Having a child with hearing loss and ADHD, learning difficulties worries me no end I struggled with her being in primary school how the hell I am going to cope her being in high school!! I seemed to have spent the last 7 years in a bubble which sadly has now popped as high school is such a different ball game

  1. They are expected to be independent
  2. Remember what they need each day
  3. Organise themselves and get to lessons on time
  4. Get their own food and Eat at lunchtime
  5. Be responsible
  6. Do the work set or have the confidence to ask for help

While for most children going into year 7 may not have as many problems with some or all of these for my daughter these are all milestones she has not yet reached. This is not through a lack of trying to get her to be independent, and trying as many helping strategies as we can to enable her to function as expected by society and peers. Its just some days this holiday it has more added stress and upset on top of everything else that we as a family have to try and overcome. Six weeks is such a long time for a child to be out of school, out of routine, away from their friends and peers. I worry…..

To prepare for high school we have

  1. Chatting daily about high school, familiarising her with talk of high school, answering any questions that she has
  2. Pinning up her school timetable so that she has regular access to it to try and familiarise herself with the sorts of lessons she will have
  3. Taking lots of photocopies of the timetable, I would advise doing this for any child starting high school as they will all loose it at one point or another
  4. Keeping the school uniform out and visual – its hanging in her room with her bag, shoes, pencil case so that she gets use to them, sounds silly to some but having new items can be daunting making sure my daughter is comfy with her new stuff is just as important
  5. Next week we will start getting back into the school routine in regards to times. When school starts we will need to leave the house at 8.20am so in preparation I’ll start getting them in the routine of up, breakfasted and dressed by 8.20am

Its also important to try and not project your own insecurities about your child starting high school. I am finding it really difficult to not become anxious, worried and over protective about how she will cope. I know its my job to worry and to make sure that she has what she needs but she also needs me to be positive and reassuring. I need to let her be as independent as she can be but as a parent and a carer I also need to make sure that she has the support from us as a family as well as the school.

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This is where trying to build a good relationship with new teachers and heads of departments is key. I have spent time worrying that I may be seen as that annoying parent who email’s questions and has had numerous meetings with the senco, but for us this has allowed my daughter to familiarise herself with the school. Its during these meetings that I was put at ease and told I could continue to email if I have any worries or concerns. We all hear the terrible stories where schools don’t communicate with parents and there is no support, teachers don’t receive training in special needs, there is no money, EHCP’s are notoriously difficult to get – we have tried twice and it boils down to being in schools that meet her needs. Parents are left feeling angry, upset and disillusioned with the whole education system. I know at times I feel that way.

High school is the next step up, the next milestone and the fact that there is no playground and no parent – teacher interaction first thing in the morning and last thing at the end of the day in my opinion shouldn’t matter, as parents we should be able to get the support we need and be able to speak to those that care for our children in our place. My advice don’t keep quiet, fight for your children, like I said its not another planet its just high school and lets face it high school is difficult enough for any child.

Good luck to all those taking their first steps into high school in the next few weeks parents and children alike

x Leanne X